Beyond the Water's Edge: Charting the Course of Managed Care for People with Disabilities - Conference Resource Book. Families' Out-of-Pocket Expenses When Caring for Children With Special Needs: A Preliminary Report Comparing Children in Medicaid and a Commercial Product Line-- Presentation Summary

11/01/1996

Elizabeth A. Shenkman, Ph.D.
Elizabeth Shenkman is the Coordinator of Research and Program Evaluation at the Institute for Child Health Policy of the State University System of Florida, and an Assistant Professor of Pediatrics at the University of Florida. Dr. Shenkman is the Principal Investigator on the following research projects: Contractual Arrangements with Physicians: Implications for Pediatric Health Care, funded by the Robert Wood Johnson Foundation; Managed Care: Implications for Families' Out-of-Pocket Expenses When Caring for Children with Special Health Care Needs, funded by the Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Health Policy; and the School Enrollment-Based Health Insurance (SEBHI) Program Evaluation, funded by the Florida Healthy Kids Corporation. In addition, she is the Co-Principal Investigator for the following project: Children with Special Health Care Needs Within Managed Care: the Department of Empirically-Based Models, funded by the Department of Health and Human Services, Maternal and Child Health Bureau.

BACKGROUND

  • Concerns about children with special needs in managed care environments
  • Limited data from managed care organizations about enrollees
  • Strong financial burdens in fee-for-service system
  • Will these burdens be greater in managed care?

PURPOSE

  • Present preliminary information about families' out-of-pocket expenses when caring for children with special needs
  • Two groups of children
    • Commercially-insured through a special program
    • Medicaid fee-for-service or primary care case management
  • Continuing to collect data for both of these groups

THE THIRD PARTY PAYERS

  • Commercial Product Line
    • Insured through a special program providing subsidized premiums
    • About 30,000 enrollees
    • Comprehensive benefit package
    • Private not-for-profit corporation negotiates contracts with health maintenance organizations
    • Health maintenance organizations bear risk and maintain the provider network
    • Currently four participating
    • Primary care provider serving as gatekeepers
    • Program enrollment is voluntary
  • Medicaid Product Line
    • About 49% of the children are enrolled in primary care case management
    • Comprehensive benefit package
    • Children covered varies according to Federal Poverty Level
    • Medically Need Program available

THE BENEFIT PACKAGE

  • Well child care visits and immunizations
  • Primary and specialty physician office visits
  • In-patient hospital care
  • Surgical procedures
  • Emergency services and transportation
  • Prescriptions
  • Vision screening and glasses
  • Hearing screening and hearing aids
  • Physical, occupational, speech therapy
  • Mental health services

HOW WERE THE CHILDREN SELECTED?

  • Identified initially from claims data from participating health maintenance organizations and Florida Medicaid
  • Used International Classification of Diseases, 9th Revision
  • High and low prevalence conditions included
  • Screening questions used to identify those with greatest needs
    1. Because of a physical or mental condition, does your child require more supervision than other children of his/her age?
    2. Does your child require extra or specialized medical care, therapies, supplies, or medical equipment because of a special health care need?
    3. Has your child had his/her special health care need for 6 months or longer?
  • Must meet a or b or c

OUT-OF-POCKET EXPENSES MEASURED

  • Direct expenses--medical care expenditures for diagnosis, treatment, continuing care, rehabilitation and terminal care
  • Other direct expenses--expenditures items or services such as respite care, special diets or formulas, medical supplies, special or additional clothing, and others
  • Indirect expenses--time spent in providing care for the child and lost employment opportunities

CAREGIVERS' OUT-OF-POCKET EXPENSE SURVEY

  • Panel of reviewers
  • Field testing
  • 45 to 60 minutes to administer as telephone survey

WHAT WAS CONSIDERED AN OUT-OF-POCKET EXPENSE

  • If the item or service was paid for entirely or in part by:
    • A parent or guardian
    • Another family member residing in the household
    • The child's supplemental security income check
  • Co-payments categorized according to the expense incurred

OTHER CATEGORIES MEASURED:

  • Child's functioning using the Functional Status Rating Scale short form
    • Addresses mood, interest level, communication
  • Diagnostic information
  • Demographic information

DIAGNOSTIC CATEGORIES

  • Array of diagnoses represented
  • Used diagnostic categories to group the children
  • Also used scores on Functional Status Rating Scale to describe the children
  • Wide variation in functioning seen both within and between diagnostic groupings

SUMMARY AND RECOMMENDATIONS

  • Highest expenses for families in "Other Direct" category
  • Regressive patten of expenditures for both groups of children
  • Benefit packages must consider broad array of services and items
  • Significant caregiving time
  • Health care cost savings can be achieved; but at what price to families?

FUTURE WORK

  • Include influence of participation in State Title V Children with Special Health Care Needs Programs
  • Explore unmet needs
  • Explore lost employment opportunities
  • Link to actual health care use data
TABLE 1. Total Number of Children Identified
Category Florida Medicaid Commercially Insured
Total number of children screened for ICD-9-CM codes 307,241 27,487
Total number of children enrolled within the last three months of selecting the sample 253,562 13,591
Total number of children with at least one ICD-9-CM code enrolled in the last three months of selecting the sample 84,315 1,916
Percentage of enrollees with at least one ICD-9-CM code and enrolled within the last three months of selecting the sample 33% 14%

 

TABLE 2. Families Screened for Study Participation and Surveys Completed
Category Florida Medicaid Commercially Insured
Completed screening questions 112 547
Did not qualify 12 (10%) 128 (23%)
Qualified but refused to participate 24 32
Qualified and completed a survey 76 387

 

TABLE 3. Demographic Characteristics of the Study Sample
Category Children Receiving Medicaid Commercially Insured Children
Respondent Gender
- Female
- Male
 
97%
3%
 
95%
5%
Respondent Age 37.43 ± 10.90 39.55 ± 9.99
Child's Age 9.23 ± 5.23 10.48 ± 6.21
FSII (R) Score 78.53 ± 18.69
(range 17 to 100)
87.20 ± 15.33
(range 21 to 100)
Child's Racial Background
- White
- African-American
- Other
 
80%
15%
5%
 
85%
8%
7%
Child's Ethnicity
- Hispanic
- Non-Hispanic
 
11%
89%
 
12%
88%
Family Income
     Average Family Income
- less than $9,999
- $10,000 to 14,999
- $15,000 to 19,999
- $20,000 to 24,999
- $25,000 to 34,999
- $35,000 to 44,999
- $45,000 or more
- Don't know/refused
 
 
30%
17%
14%
12%
10%
7%
7%
2%
 
 
13%
22%
19%
15%
12%
8%
5%
7%
Cash Assistance-SSI for Child
- Used actual records to respond to questions
- Use an estimate of expenses
35%
35%
65%
0%
47%
53%

 

TABLE 4. Children's Primary Diagnostic Categories and FSII(R) Scores
Category Children Receiving Medicaid (N=76) Commercially Insured Children (N=387)
Percent Children FSII(R) Mean Core and Standard Dev Percent Children FSII(R) Mean Core and Standard Dev
Mental and Emotional Disorders 16% 67 ± 20 39% 75 ± 22
Respiratory System 13% 69 ± 206 40% 90 ± 15
Neurological 25% 76 ± 19 4% 82 ± 18
Musculoskeletal System 17% 86 ± 13 2% 92 ± 10
Special Sense Organs 8% 80 ± 18 4% 86 ± 15
Endocrine System <1% 71 ± 0 3% 90 ± 12
Cardiovascular 4% 88 ± 12 <1% 88 ± 0
Digestive System 3% 88 ± 20 <1% 90 ± 0
Multiple Body Systems 6% 88 ± 09 0% NA
Genito-Urinary System 1% 76 ± 10 1% 86 ± 18
Hemic and Lympathic System <1% 67 ± 0 0% NA
Neoplastic Diseases--Malignant <1% 100 ± 0 <1% 86 ± 0
Immune System 2% 87 ± 13 <1% 87 ± 0
Growth Impairment 2% 96 ± 7 0% NA

 

TABLE 5. Direct and Other Direct Expenses for the Month and Year in Dollars
Category Children Receiving Medicaid Commercially Insured Children
% Reporting Expense Mean % Reporting Expense Mean
Direct Expenses Per Month 37% 131.89 ± 393.35 87% 28.59 ± 139.2
Direct Expenses Per Year 38% 1,072 ± 1,4629.1 86% 384.11 ± 1,582
Other Direct Expenses Per Month 89% 162.57 ± 305.93 63% 30.79 ± 69.8
Other Direct Expenses Per Year 89% 1,444.1 ± 1,779.2 63% 689.4 ± 2,502.6

 

TABLE 6. Direct and Other Direct Expenses as a Percent of Family Income
Category Children Receiving Medicaid Commercially Insured Children
% Reporting Expense Mean % Reporting Expense Mean
Direct Expenses Per Month 37% 4.87 ± 32.4 87% 2.32 ± 10.38
Direct Expenses Per Year 36% 4.33 ± 12.2 87% 2.8 ± 12.78
Other Direct Expenses Per Month 89% 12.79 ± 21.9 63% 2.11 ± 6.20
Other Direct Expenses Per Year 88% 11.25 ± 25.6 63% 2.25 ± 10.98

 

TABLE 7. Caregiving Time
Category Percent Reporting Mean Hours and Standard Deviation
Medicaid 85% 15.33 ± 9.19
Commercially Insured 48% 8.76 ± 3.2

 

 

 

 

 

 

 

 

 

 

 

 

View full report

Preview
Download

"96cfpk01.pdf" (pdf, 147.17Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"96cfpk02.pdf" (pdf, 45.07Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"96cfpk04.pdf" (pdf, 50.53Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"96cfpk05.pdf" (pdf, 52.03Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®

View full report

Preview
Download

"96cfpk06.pdf" (pdf, 1.02Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®